oncology and blood disorder results

I did a short update on Facebook about Lincolns Blood level.

  Today I wasn’t mentally prepared for more bad news. Kick me while im already down I guess?
Sorry not feeling myself.
Anyways.
Lincoln had his one year appointment a month ago and the doctor wanted to do a full blood count to make sure nothing was affected by his ichthyosis like his vitamin d level.
Well they came to find out his ANC levels were low. Doc said to come back in two weeks and we will make sure this wasnt just him fighting off an infection and causing his levels to be low.
I wasnt to concerned with his levels and Childrens Hospital needed to do a full blood count for his surgery anyways so he just got the repeat test yesterday.
His levels came back even lower. He is in the severe range of 200.
What does this all mean?
Basically Lincoln doesn’t have enough white blood cells to fight off an infection. If his temp gets above 100.4 we need to rush him to childrens hospital because his body is not capable of fighting off infections.
Whats next? We have an appointment with the seattle childrens oncology and blood disorder clinic on monday to figure out A. If we can go ahead with his surgery and B. What is going on to cause these levels to be dramatically low.

As I sat in the Oncology and Blood Disorder Clinic waiting for Lincolns name to be called I couldn’t help myself from praying for all the little precious kiddos in that clinic. I passed by 3 year olds getting their dose of chemo and little ones getting more blood drawn. My heart ached for their mammas as they held them.

Our turn.

Lincoln sits on my lap, head on my chest and wont take his eye of the door, every time someone walks by his lip starts to quiver and he squeezes on to me with all his might. He’s obviously aware of whats going to happen. I wish I could talk to him and assure him that this is in his best interest, I wish I could bribe him with ice cream or any toy he wants. Like Nana says.. give him all the babas he wants.. I sing to him and fight back the tears. 

The doctor explained to me that a level of 200 isn’t just severely low its life threatening. We all have bacteria in our bodies. From our mouth to our guts, its normal. But with a level like Lincolns of 200 he cant even fight off those normal bacteria. The Neutrophils that are low are located in the bone marrow.

She told me that she isn’t comfortable sending Lincoln into surgery with that low of a count, With his brain being exposed for surgery he is susceptible to an infection and he wouldn’t be able to fight it off.

The Plan would follow.

We NEED to get to the bottom of the low numbers.

  • Get labs done and for some miraculous reason Lincolns ANC increased significantly we can talk about going ahead with surgery. Which is very unlikely since the numbers have been severely low, twice.
  • Schedule a day the next day or two to be put under to get some bone marrow and see if Lincoln has a type of blood cancer or a blood disorder.

Getting something simple done like labs is getting harder and harder. Kiddos with ichthyosis have much thicker skin and veins are hard to find. I literally can’t hold my baby down anymore, it is tearing me apart, his eyes filled with tears, so young and doesn’t know why mommy is allowing this Is gut wrenching. This time It takes 3 times to find a vein and get the 12 ml of blood.

I felt the need to not cancel his original Thursday pre op appointment for his brain surgery. Just in case the numbers go up.

My car ride home is not short. 83 miles to be exact. Enough time to cry, scream inside (don’t want to wake Lincoln up) hit my steering wheel, talk with God, Pray, and cry some more.

That evening we get a call. “Lincoln SURPRISED us! His numbers jumped to 870.” Tears roll down my face. ” I’m comfortable with sending him to surgery IF on Thursday when you go to his pre op and get more labs done (lump in my throat just thinking about more labs) his numbers stay at 870 or continue to go up.” ” I’d still like for you to follow up with us after he is recovered from his surgery to see why his numbers are still so low, he is out of the severe range but he is still low, we need to find out why they are this low so we can get his numbers up to normal.”

 

Prayer Warriors- please pray for Lincolns ANC levels to continue to surprise the doctors and climb up by themselves so A. there is no need at all to even follow up with them. and B. so that he can continue with his surgery.

I also want to say Thank you to everyone who has donated to Lincolns Fund (https://www.gofundme.com/lovinglincoln)

I didn’t stress as I filled up my gas tank yesterday for the 160 mile journey to get to Childrens and back home. Thursday will be our third trip there in the last week!

Love you all!

 

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One thought on “oncology and blood disorder results

  1. Praying with you, dear Kasie and Adam…kneeling at the feet of Jesus for healing of precious Lincoln! Love, Annie

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